How do you learn about a disease you have without scaring yourself to death!?

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I just did a survey for Overcoming Multiple Sclerosis (dot-org). I was reminded that I completed this survey on holistic practices with MS in 2012 and that this is a follow up. While I don’t remember the 2012 survey ( I participate in surveys-#5 at least once a month) – It didn’t seem unusual that I did it and that I don’t remember it! (my memory fails me -#4 more than once a week) But they kept reminding me and every time I got the email- I thought … I’m too busy to do a survey: a lot of the time. It didn’t come with an incentive ( 1. an amazon gift card, 2. a donation to the charity of your choice) which would make the decision a no brainer. But it is a non-profit organization that is interested to know how I incorporate holistic practices into my day to day with MS. (more than twice a week). And okay… I am motivated by doing something that could help peeps like me who have MS. It’s a non-profit.org afterall. I’ve founded a non-profit org (once in the past 10 years)- I get it.

I participated in spite of the fact that I resent selecting numbers to describe my variable, unique version of MS (#5 depends on how i feel that day)* And I hate that by participating in surveys for the greater-good makes it glaringly obvious that I’m getting worse. Sometimes I feel offended by the questions. I’m always looking for that last option that reads #5- Stop asking me these questions or #6 None of your business. Those usually deteriorate into one word expletives by the time I get to question #104 and at that point I’m amusing myself with my real life responses which aren’t fit for any survey, but do reflect how I’m feeling. (depending on the day).

But today was a little different. I didn’t mind (as much) the labels or generalizations that I was forced to select.

It seems on some days I can find the “feel-good” in how I respond to the question “how often does pain interrupt your normal activity” (#5- rarely) and not so bad about the “how often do you rely on a cane or someone’s arm to feel stable.” (every day).

*My name is Amy and I’m a compulsive-(parenthetical)-hyphenating-italicizer!

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About Amy

Hi ! Thanks for visiting MSLOL Blog. With all most three decades of MS under my belt my favorite coping mechanism is this here blog. Writing is a great way to have control (cmd-X, cmd-V). If only the rest of life were so easily managed. I'd be doing some serious cmd-Xing on my brain!

So browse around.. and be sure to check out MS SoftServe. It is about to change how we learn about MS on the web.

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